How to Apply
The Undiagnosed Diseases Network (UDN) is a research study that is funded by the National Institutes of Health Common Fund. Its purpose is to bring together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies.
Through this study, we hope to both help individual patients and families and contribute to the understanding of how the human body works.
Requirements for Online Application
If you decide to apply for this study, you will need to answer a series of brief questions through our application portal, the UDN Gateway, related to the following:
– Contact information
– Demographic information
– Health care provider information (name, address, phone, fax, email)
– Brief medical history questions
– Previous evaluations
– Travel limitations
A study recommendation letter from a health care provider (for example, specialist, primary care physician, nurse practitioner, or genetic counselor) is also necessary in order to submit the online application to the UDN. The letter must be written in English, signed, and on letterhead. A relative cannot write the letter. The study recommendation letter must include:
– A summary of the applicant’s medical problems
– Date when symptoms were first noticed
– For pediatric patients: prenatal and birth history
– Previous diagnoses
– History of evaluations and testing
– History of treatments and medications
– Current medications
– Family history
– Health care provider’s diagnostic impressions
Please provide us with a 1-page patient narrative telling us your story from your perspective. We will have received the letter from your referring provider, but the narrative may help the UDN understand your medical history directly from you. Sometimes photos help the UDN team better understand the symptoms the applicant is experiencing. If you would like to provide a narrative and/or photo, please upload it to the application.
Application Review Process
After an application is complete and submitted in the Gateway, applicants receive an email notification. The application is then sent to one of the UDN clinical sites to review.
The UDN clinical sites typically contact applicants within one month of application submission to request additional information, such as:
– Medical records, including growth curves for pediatric patients
– Laboratory studies
– MRI, X-ray, or CT images (can be sent on CD)
– Photographs or videos
– Pathology slides and reports
In order to help with the application review process, you can begin to collect these records now. However, you should not send any medical records until you receive specific instructions to do so from your assigned UDN clinical site. Do not send any medical records to the UDN Coordinating Center as this will delay processing of your application.
After all of the necessary information is received by a UDN clinical site, it typically takes 6-8 weeks for the network to make a decision whether to accept an applicant.